Saturday, April 23, 2016

What Will Matter

"Have you ever wondered what marks our time here?"

Is our time marked by the suffering and hurt we endure and overcome? Is it marked by the moments that inspire us to be better and hope more? Is it marked by the moments that captivate us and take our breath away? Is it marked by the moments we have chosen to let go of bitterness and let joy and love take residence in our hearts instead? Is it marked by the moments we have chosen to love without expecting anything in return? Is it marked by our compassion for the world and our determination and effort to leave it a bit better than we found it?

Does our story matter? Does what we are doing truly matter and does it make a difference? Does it encourage someone to face their fears? Does it make someone believe that their story matters and that it doesn't have to end in defeat? Does it make someone believe that they, themselves, matter and they are not alone?

I think we all have a passion ingrained in us that makes us long to make a difference in some capacity with our time and energy. We all long to matter. We all want to leave the world a little more beautiful and to be able to reflect back on our lives and decisions and feel at peace. We hope to feel that we've done or are working towards doing something that is not fleeting with our short time on this earth. We hope that our actions and our legacy matters to someone, somewhere.

I often find myself grasping at the wind, in vain, wholeheartedly pursuing things that don't truly matter. But what I’ve come to learn this year is that people matter, more than anything else in this world. Their struggles, hopes, dreams, and triumphs matter. Listening to and caring for those around me is more important than any task that I have to finish or any ambition that I have. Our success in trivial things shouldn't define our worth. It's easy to get wrapped in the day to day tasks and to forget to pause and put others first. It's easy to not make the most of every vulnerable moment and to ask people how their day truly was and wait to hear their answer.

I think what will matter at the end of the day is the kindness we displayed to those around us and the steps we have taken to make someone around us feel a little less alone. What will matter is if we made a conscious effort to be aware of the others, even in the midst of the chaos in our own lives.

I often find myself wondering why there's so much hurt in the world and what the purpose of it all is. As I’ve wrestled with this question, I have found part of my answer in one quote that has always been close to my heart: “Without suffering there would be no compassion.” In my opinion without a taste of suffering there would not be love or the longing to make others feel valuable, important, and loved. There would be no willingness to care, to reassure, to be vulnerable, to listen, to sacrifice, or to love.

Without suffering we would not dream of a better world filled with kindness and compassion and work within our capacity to make that dream a reality. We would not be catalysts for positive change, for acceptance, or for love. We would not have the desire to lend a hand, or an ear to the lonely, hurting, and struggling. We would simply walk away from hurt as it would not tug at our heart strings. We would not employ our strengths to work joyfully to help worthy causes. We would not be driven to demonstrate love and kindness to the world in our own unique way.

There is so much pain and sorrow in this world and there are so many people that feel hurt and alone. We have the power to stop and to care and to be compassionate. We have the ability to sympathize with others and share in their suffering. We also have the power to scar and destroy others with our indifference and to make them feel insignificant when we choose not to listen.

True compassion requires that we take a step outside of ourselves and care deeply about those around us. To me, being compassionate means being brave enough to enter someone's storm and listen to their story and meet them where they are at. It means not holding back our own struggles. It means baring our soul more than we feel comfortable and being vulnerable. We risk rejection and hurt in the hopes that what we have to say about our experiences on this earth will make a difference. Compassion instills in us a new found bravery and a different way of thinking and thus a novel way of interacting with the world. It allows us to share our hurt and our struggles in order to remind the world that words can cut, rejection can sting, actions can destroy, but ultimately love and forgiveness can help heal the wounds on our hearts.

All the beautiful souls I’ve met through different medical conferences, camps, and through blogging have touched my life in some capacity. They’ve made me feel understood and proud to be a part of a community that is incredibly compassionate and that understands the value in loving people the way that they are. They have believed in me, supported me, and reminded me that I am not alone in my struggles to continually put Ichthyosis back its place as merely the condition of my skin, and for that, I am eternally grateful. A few of these incredible people have given me permission to share parts of their story and I am doing so in hopes that you will be reminded that we all have the power to make a difference with our kindness and our willingness to share about our lives.

These friends believed that by baring their soul a little bit, they would make a difference. I am honored to share parts of their story: their struggles, their experiences, and their hopes. Their words have reminded me that the awareness and compassion I'm dreaming of and fighting for is for them and anyone who has ever felt inadequate because of a difference, whether it is visible or not.

I implore you to go out there in this world filled with so much sadness, pain, and loneliness and do something each and every day to make the world a little brighter for someone else. I challenge you to care. To listen. To be a light. To be kind. To be gentle. To give people a chance. To love wholeheartedly. To give your time. To listen to people's stories without judgment. To learn. To be brave. Most of all, I challenge you to allow compassion to dictate your actions. Do not suppress the desire to open your heart and to love fearlessly and care deeply for others because the thought of getting hurt terrifies you.

Compassion is incredibly beautiful. It connects us all and allows us to surrender our pride in the hopes that we can help to lift up those around us. It compels us to give more freely of our time and our love to those around us. It convicts us to stop building up walls around our hearts and to share something that truly matters and makes us vulnerable with the world around us.

I truly believe that compassion changes everything. It ignites the soul and directs us to love, to care, and to see beauty in the world around us. Even in our darkest hour we can hope and believe that there is beauty that can come out of our pain because compassion is out there and it can and will help restore our brokenness.

Words from a few of my beautiful friends...

“It is my opinion that everyone is battling a personal demon; the only difference is that I have to wear my demon on my face...Growing up this made me self conscious and shy. I would apologize for my skin before it was mentioned because I felt constantly judged for it. I’ve been asked if I would choose to be born without this condition and the answer is always no. This condition humbles me, allows me to see the best in other people, and makes me strong. More than that this condition is a part of me. It has taken time, but I’m now able to put down my sword and grow to see my skin condition not as a demon, but as an angel.”

-Sydney Rosenthal

“Having Epidermolysis bullosa (EB) has caused me to have such an incredibly high maintenance daily lifestyle. One that I can never get a vacation from because it's simply all I must do to survive day to day..I wear my battle scars with pride. Many look at me in amazement that I can simply walk into a room so clearly worn and I still light it up with my confidence. I've lived through every single one of the wounds that caused the scars on my skin..Because we show how we suffer it's visible to all; maybe we are lucky because everyone can see it.. Others suffering mentally are often brushed aside and labeled as being dramatic. it is such an incredibly sad way our society disregards others without fully hearing them..My intentions are always to make a lasting impression. All positive I hope. For however long God allows me to be here. Knowing my fate makes me live everyday to the fullest.”

-Michelle

“I have this enormous heart full of compassion because I know what it's like to be on the outside looking in. I have been in a room full of people and felt like I didn't fit in. I know what it is like to be alone and feel like no one understands what I'm going through. I have felt the pain of being bullied, stared at, made fun of, and excluded. I've been frustrated that I was never the "pretty girl." I've hated the media for portraying beauty the way it has and knowing I will never reach that standard. Yet, all of this has made me the woman I am today. It has given me a heart for other people who are going through a similar situation. It has given me the ability to help them get through it. And it has given me an inner strength and confidence that I never would have gained if I didn't face all that adversity.”

-Bailey Pretak

“I've learned that I would rather have people ask me questions about my skin condition instead of just staring. It helps raise awareness. Family is the best support system and I wouldn't have done or accomplished half of what I've done without them.”

-Tamara Valdez

"There is no cure so far for ichthyosis, so we have to learn and try things that work. Meeting people and sharing experiences helps me deal with all sorts of situations. Knowledge is power!"

-Diana Gilbert

"Now I think it's my job to spread awareness about Ichthyosis because a doctor cannot teach or treat what he or she has not learned about. The beauty of a person is shown by their grace, attitude, support of others, and love. We do not have to be ashamed of who we are. We are blessed by who we became through our struggles."

-Gene Yates

"The turning point for me was when I accepted my Ichthyosis. I don't remember what age it was, but I knew that this was my reality. Ichthyosis is for life and it's not going away. And so I stopped looking for a cure, focused living the best life I could with the treatments I can afford and access. I took pride in my appearance - dressing well, making sure my skin looked its best (without hiding it) and then I started to tell my story on my blog. Through doing so, I've met hundreds of others with ichthyosis. Many tell me through telling my story, I've given them hope for their/their child's future, and made them feel less alone. In 2015 I organized Australia's first Ichthyosis meet. For many of the 75 attendees (25 had the condition), it was the first time they'd met anyone else with Ichthyosis. Firm friendships were formed. It was wonderful to be able to being these people together. I wish I had this connection with others who live with Ichthyosis when I was a child."

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About Me

“To love at all is to be vulnerable. Love anything and your heart will be wrung and possibly broken. If you want to make sure of keeping it intact you must give it to no one, not even an animal. Wrap it carefully round with hobbies and little luxuries; avoid all entanglements. Lock it up safe in the casket or coffin of your selfishness. But in that casket, safe, dark, motionless, airless, it will change. It will not be broken; it will become unbreakable, impenetrable, irredeemable. To love is to be vulnerable.”